Loss of bladder and/or bowel control (i.e., incontinence) occurs as Alzheimer's disease or dementia (AD) progresses. Skin damage, in the form of perineal dermatitis and pressure ulcers, is the most frequent physical consequence of incontinence and increases care needs. This study seeks to better understand the unmet needs of informal caregivers from diverse racial and ethnic backgrounds and healthcare providers caring for persons with AD in relation to incontinence and skin care. Nearly 10 million Americans are providing informal caregiving for persons with AD, and 32 % provide help for urinary and/or fecal incontinence. Yet people are reluctant to inform their healthcare provider about incontinence, and providers rarely inquire about it. Opportunities for therapeutic consultation are missed. Although embarrassment and social stigma likely play a role in deterring discussion about these problems, there may be other reasons. Low health literacy of caregivers about incontinence and associated skin damage may be a barrier. Healthcare providers may have limited knowledge about the various treatment strategies. Informal caregivers of persons with AD experience multidimensional stressors on their well-being, and incontinence increases caregiving burden;role changes and physical demands related to toileting and cleansing are major stressors. Incontinence is one of the main reasons a person with AD is placed into a nursing home (NH). Despite reductions in their direct care obligations, caregivers feel anxiety and guilt after NH placement and develop new worries about the adequacy of care. More than half of the people in NHs are incontinent and need toileting assistance, and 6-10% have incontinence associated skin damage. Hence, there is a need to strengthen the ability of caregivers and healthcare providers to provide optimal care for AD patients who are incontinent and at risk for skin damage. In this study, we will address both sides of this gap in care. Without early recognition and appropriate measures, skin damage worsens becoming painful, distressful, infected, and costly. Persons with darker skin tones may be at higher risk for lack of identification of skin damage and subsequent greater severity of damage. Psychoeducational interventions ameliorate a number of adverse effects of caregiving and delay institutionalization of the care recipient. In this study, a need assessment using focus groups and interviews of caregivers and healthcare providers, respectively, will inform the development of a psychoeducational intervention intended to lessen incontinence severity and prevent skin damage in the person with AD, increase the mastery and reduce the stress of caregivers, and facilitate providers to initiate effective therapeutic interactions with patients/caregivers. The findings have potential to delay institutionalization and improve the well-being of the AD care recipient. Involving stakeholders from a community partner organization (informal caregivers and healthcare providers) has potential to increase their understanding about research and its ability to produce an intervention that is responsive to their needs. It will also facilitate future testing and dissemination of the intervention. Loss of bladder and/or bowel control and the skin damage that can result are health problems in Alzheimer's disease or dementia (AD). They reduce the quality of life of the care recipient with dementia and increase the burden of family or friend caregivers. Discussion about these problems between informal caregivers and healthcare providers is lacking, and opportunities for treatment recommendations are missed. Assessments of needs related to incontinence and skin damage of informal caregivers of diverse racial and ethnic backgrounds and healthcare providers will guide development of an educational and supportive intervention;the intervention is intended to lessen the severity of accidental bladder or bowel leakage and prevent skin damage in the person with AD, reduce caregiver stress, and facilitate optimal care by healthcare providers and informal caregivers.

Agency
National Institute of Health (NIH)
Institute
National Institute of Nursing Research (NINR)
Type
Small Research Grants (R03)
Project #
5R03NR011243-02
Application #
7689328
Study Section
Special Emphasis Panel (ZHD1-DSR-H (OD))
Program Officer
Wasserman, Joan
Project Start
2008-09-18
Project End
2011-11-30
Budget Start
2009-09-01
Budget End
2011-11-30
Support Year
2
Fiscal Year
2009
Total Cost
$32,276
Indirect Cost
Name
University of Minnesota Twin Cities
Department
Type
Schools of Nursing
DUNS #
555917996
City
Minneapolis
State
MN
Country
United States
Zip Code
55455